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Advanced Prostate Cancer
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Newly Diagnosed

I’m new here, thankful to find people who’ve been through this and willing to share what they’ve learned.

I was diagnosed with PCa on November 11, 2017. PSA 22.3. Biopsy revealed Gleason 4+4, 7 of 12 cores positive. Bone scan revealed metastasis to left inferior pubic rami.

I have a dull ache in my perineum and pain in my left sit bone, mostly tolerable without any pain meds, but worse at night.

I’m currently talking to urologist at Stanford and radiation oncologist at UCSF. Doc at UCSF’s initial recommendation is that I go on ADT for a couple of months with Lupron, Zytiga, and prednisone followed by radiation. They also want me to do a PSMA scan before beginning treatment. I may be able to get in a clinical trial (https://clinicaltrials.gov/ct2/show/NCT02981368) to avoid the cost (not sure insurance will pay). They put me on Flowmax to reduce my nocturia. Just started, but seems to help.

Meeting with urologist from Stanford tomorrow for another opinion. Also asked UCSF for referral to integrative oncologist and have appointment in January with UCSF med onc.

Grateful for this forum. I’ve been doing a lot of reading and research, but it’s overwhelming. I know my PCa is advanced, but would love to try any alternative approaches that might be effective before I go down the path of ADT or radiation.

I’d welcome any thoughts or advice, or any ideas for direction to take to help me wrap my head around this.

Thanks,

Robert

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The ADT course BEFORE radiation is standard in situations such as yours and has been proven to weaken PCa cells for more die during the radiation. Good luck.

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Thanks, spinosa. They say to start a couple of months before radiation and that I would have to continue with ADT for 2 years.

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makes perfect sense...

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Robert,

Welcome. You are on the right track. You may wish to add a medical oncologist who specializes in PCa to your team. You are likely to have a lot of life left, and a MedOnc would be with you long-term as other specialists (radiation oncologist) come in and out of your life.

Allow someone near you (spouse, partner, family member, or close friend) go to appointments with you. I always appreciate having a second set of ears.

All my best as you attack the beast.

Yost.

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Thanks very much, YostConner. Yes, I see a MedOnc in January. Wouldn’t wait, but thinking it may be best to see everyone at UCSF, since I know they work closely together and it’s a Center of Excellence for cancer. And yes, I have a partner and she comes with me whenever possible.

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I can not agree with Yost more. Please have someone there to take notes, help you ask questions and be a sounding board. I can not tell you how many times I misinterpreted what the doctor had said. I would be lost without my wife.

Ask them about putting you on a combination of Lupron and Zytiga. They have found that the combination of these two hormonal therapies has a very positive effect.

It looks like you are doing a good job of research but you may want to refer to the Prostate Cancer Foundation. They have some good information and are a good starting point.

PCF.com

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Thanks, Dr_WHO. The Prostate Cancer Foundation looks interesting. FYI, the URL is pcf.org.

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Sorry about the con vs org.

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No worries. :)

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Hi Robert

I am recently diagnosed PCa and had surgery to correct a right ureter blockage and currently still have a stent which have to be removed in the near future. Read my post as I am self treating. I main aim is to boost my immune system to fight this cancer and with the recent scans report on a few days ago I decided on a more drastic approach. I decided to be a lab rat to put it mildly. At the moment I feel great and working 3 days a week 6 hours a day to allow me plenty of rest and work on my cure not conventionally. Will be in touch.

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Re: Stents.

Make sure when you have a stent inserted that you take an antibiotic meds (Cipro is a good one).

Good Luck and Good Health.

j-o-h-n Thursday 12/07/2017 (day of infamy) 11:16 AM EST

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Hi j-o-h-n

Thanks for your concern. My surgery was done on 27.10.17 (October)

I have recovered from my right ureteric stent surgery although I have to arrange for removal in the near coming months.

As part of my journey I have incorporated an exercise which I tried to do 3 x 1/2 hour session each day. Look up u tube hand swinging exercise cure Stage 3 colon cancer. It healed a Taiwanese neuro surgeon.

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Hi Robert

I was diagnosed with Advanced PCa on 27.10.17. With a right ureteric stent still implanted I am starting my journey like you. Now recovering from my blocked right ureter I feel good and back to work at reduced hours. Unlike you I don't have any pain. I have been self treating myself with some ideas from dirt cheap cure cancer protocol mainly to boost my body immune system, Now I am fast tracking on doxycycline and vitamin c. All this has not been proven. 2 days ago when I meet up with my urologist he overturn his earlier treatment plan and officially encouraged me to go on treating myself. I have yet to disclose to him what I am doing but hinted he would laugh at me, so he did not pursue what I had done. So good luck with your decision.

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Roland,

I understand your desire to treat yourself with medications that don't hurt or make you feel bad, but I strongly recommend that you visit a medical oncologist specializing in prostate or genitourinary cancers (not a urologist), preferably from one of the teaching and research hospitals, as for example listed here:

cancer.gov/research/nci-rol...

There seem to be astronomical amounts of completely useless or downright harmful cancer cures being touted on the Internet, often accompanied by conspiracy theories that claim that the doctors and pharmaceutical companies are all out to keep your cancer going so that they can get more money from you. Naturally the promoters of the conspiracy theories only have your best interests at heart. They'd never give you false information just to sell you a book or a bottle of supplement pills. Why those professional looking web pages and videos that they spent a lot of money on web designers and videographers to make for them they just produced out of the goodness of their hearts and with no expectation of profit.

Prostate cancer doesn't hurt - until it does. And when it does it hurts bad.

You probably wouldn't consult your intuition to figure out how to fix a broken computer, or set a broken bone. Intuition is just not a substitute for science, training, and experience.

Please get professional help.

Best of luck,

Alan

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Hi Alan,

I was replying to your post. But sorry it looks like I have sent to myself. Like your expertise for a 71 year old ex computer expert.

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Hi Alan

My humble apology apart the part on signing the death warrant as I

was confused with someone else who mentioned it in the group. No hard feeling please. I am truly sorry again.

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No apologies necessary. I can't tell you how many times I've clicked a "Send" or "Reply" button only to ask myself, afterward What did I just say? Who did I send that to? What was I thinking? Yikes!

Besides that, I'm not even sure what message you're apologizing for. It probably fell into the big hole in my memory that seems to grow ever larger and deeper as I get older.

Regards,

Alan

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Thanks for your reply. I’ll be very interested to hear how you’re doing. I wish you the best and hope you’re treatment plan is successful.

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Hi Robert

This morning I am feeling Good although I did not sleep well last night. I might have consumed some super food ( carrot and celery blended juice just before sleeping)

The other thing is I have incorporated 3x1/2 hours hand swinging exercise in my daily routine. See u tube hand swinging exercise cure Stage 3 colon cancer for a Taiwanese neuro surgeon.

I think my treatment is working. I now have completed 7 days. I planned to do it for 30 days since my cancer is very advanced and aggressive.

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I had radiation 6 years ago when I was diagnosed (gleason 8) plus lupron. Recently had cryotherapy in my prostate. My thoughts on initial treatment is to go with proven methods. Radiation or surgery. Especially if you are a high risk patient (like me). I think alternative treatments are more appropritate for salavage treatments if the primary treatment fails. Just my thoughts. I'm sure you will get good advice and glad to see you are seeing more than one doctor. When it was apparent that I had biochemical failure I stared seeing an Oncolgist. My thinking was I would go back on Lupron which is systemtic treatment in which oncologists specialize in. I think it was a mistake. Oncologists are experts in systemic medicine but also try to be experts on 20 or 30 different cancers. Perhaps only 5% of their patients have prostate cancer. I am now seeing an Urologist that specializes in prostate cancer.

Hang in there. You are not alone

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Thanks, Geoff. My thought is to combine proven methods with alternative treatment, if nothing else to help minimize the side effects. I’m seeking information from multiple sources, including urologist, radiation oncologist, medical oncologist, integrative oncologist, and my own research.

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Robert welcome to the group, I see you have got excellent advice from Yost and Dr Who, alan and Gourd Dancer. I would not put off ADT for alternative treatment at this point. My comment is that UCSF is a known center of excellence in Prostate Research, I beleive Medical Oncologist Eric Small , and Dr Ryan are well known researchers in the feild of Prostate Cancer, I would stay with UCSF. As a message of hope I was dxed as stage 4 with high gleason back in 2006 at 49 years, I am 61 now. Keep fighting , never give up hope!

Dan

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Thanks, Dan. I’m seeing Dr. Fong, who works with Dr. Small, in January. I have to put off ADT until I see Dr. Carroll at UCSF and have a PSMA PET scan, also in January.

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Sounds like you will be getting state of the art care. I wish you the best and please keep us posted ,Enjoy your Holiday.

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Welcome Robert.

I've been consulting with Dr. Small at UCSF for a couple of years. The others already mentioned at the same place are also all good.

ucsfhealth.org/clinics/geni...

When you drive up, the valet parking is nice to use. The clinic is on the 4th floor.

If you have discs of recent imaging or anything like that, the people at the check-in counter can upload them to the UCSF computers before you even see your doctor. There is a convenient little snack counter on the first floor where you can get something to eat either before or after your appointment.

When/if you do a Ga68 PSMA PET/CT, that will be done at the UCSF Imaging Center at China Basin, over by the Ball Park.

radiology.ucsf.edu/location...

Check-in is at Lobby 6 on the west end of the building, and if you use Valet Parking there it is most convenient. Otherwise, the entrance to the underground parking garage is on the other end of the building, right across from the ballpark. Self parking may be difficult if it's running close to full, depending on the time of day. If you can't reasonably find a space, stop at the attendant kiosk in the center of the building and ask to have your car valet parked somewhere by them.

There is also a place to get some food a few doors down from Lobby 6, after your imaging session, or during it for anybody who may accompany you.

Charles

P.S. I had a Ga68 PSMA PET/CT Scan there in 2016 as part of a clinical trial. My original PSA was 5,006 in Nov 2013 at age 65, then down to 1.0 on primary ADT, then back up again when I started consulting at UCSF. My Ga68 PSMA PET showed around 10 places (a mix of bone mets and lymph nodes and original prostate) "lighting up" as my PSA was rising toward the 90s. I added Xtandi in Dec 2016 with a PSA of 95. Subsequent PSA nadir was 1.2. Current PSA is 1.7. One of these days I'll have to move on to another treatment mode.

You might also be interested in some Prostate Cancer Support Group in the Bay Area. See:

ustoo.org/Support-Group-Nea...

I live east of Sacramento, off Highway 50, and attend such groups in my region.

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Hello Robert. I was Dxed at what is touted to be in the top 5 PCa centres on the planet, with Gleason 4+4 and stage 4 in 2-17. One met to a femur head. Was on Lupron, then Zoladex and had terrible allergic skin reaction to both. After having to fight for an MRI guided biopsy and then being denied any Tx but Lupron for the foreseeable future, I got radiation and Brachytherapy in Florida ending in 9-17, then Trelstar injection which seems to be ok. I've been on triple blockade ADT with the shot and Casodex and Avodart since 6-17. Will be on that for 18 months. I am due for follow up radiation to pelvic lymph nodes only, next month. Recent scans show no Cancer and no mets for now. I was also prescribed Metformin for its anti-tumour properties. Also flomax twice a day. The clinic used to do circulating tumour cell test as follow up but doesn't now. I will look into having it done locally in a while. My radonc was too busy career building to do much beyond going with Lupron and periodic scans, hence my decision to get combo therapy ; now he's gone to a different country and I have a young temp replacement who's never heard of triple blockade. I am going to try to hook up with one of the other senior guys in hopes that will be a long term thing. Every PCa case has unique features and outcomes. You seem to be on the right track and good advice is available here . Good luck on your journey and don't be afraid to ask questions, get answers and do research

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Hi Robert

Well done. By the look of things you seem very well versed and have the very best PCa centre to treat you. I like to keep in touch please.

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Thanks for sharing your story. Just learning about the various treatments and will start soon. Congrats on being cancer-free and best wishes for that continuing.

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Hello Robert,

welcome to the group.

First of all, I would like to say; don't worry.

I had Radical Prostectomy, Radiation Therapy , and now on Hormone Therapy with Zoladex and Zometa.

I feel very well and my doctor is satisfied in spite of my PSA started to go up slowly.

My experience showed me that as I succeeded to manage my stress and believe that I will defeat the devil, then back to normal life, the disease became under control.

I agree with YostConner that you are on right track. Recently some study showed that combination therapy like Radiation plus ADT , or Lupron plus Zytiga had better outcome.

Oncologists have different protocols for treatment, maybe they will suggest chemo for you. and you can discuss with your doctors and also it is better to ask for second opinion.

I personally had very mild side effect with Radiotherapy and ADT, My liver and kidney function are perfect, and as my depression disappears, I enjoy again my life although my sexual life vanished.

regards.

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Hey Roland,

I totally agree with Alan, I recommend you get with a medonc who specializes in prostate cancer, one who is going to keep up with the latest protocols and treatments.

I was diagnosed in 2014 with stage 4, Gleason 9 PCA, mets throughout my skeleton and lymph nodes. I treated my cancer aggressively with triple ADT, radiation and chemo. I began seeing Dr. Charles Myers, a PCA specialist in 2015, until his recent retirement. I have started seeing Dr. Sartor at Tulane in NOLA another PCa specialist as his replacement. They work together with my local medonc as part of the treatment team I've put together. I see the specialist evert 6 months to review my status and my local medonc monthly for labs, treatment, etc.

I feel that Dr. Myers saved/extended my life. Recent Axumin scans have been clear with no active mets and PSA has been undetectable for 3 years. I am truly blessed and realize that things could change tomorrow but feel very fortunate.

Good luck on your journey, learn all you can, assemble your care team, be your own advocate and don't forget to pray hard!

Ed

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Robert,

I have had advanced stage for about a year and become resistant to Lupron.

Mine got very aggressive in October with Retroperitoneal Lymph nodes squeezing off my Ureters and I ended up with Emergency Surgery.

Anyway what I really want to share is that I have always turned to Alternative Treatment alternatives for my Health and before I jumped into Chemo I found out about Kaqun Spa.

It started in Hungary and I have talked with a number of the patients that have gone there for 3 months to come back in full Remission.

Last year the daughter of the MD who started the program opened up a Wellness Kaqun center in Las Vegas.

That is where I am now and after 2 weeks of treatments my psa has improved and I feel 100% better so I am very hopefull !

This is my first comment in this forum and I only did since you mentioned you were interested in Alternative Treatment approaches. What I have experienced in conventional world is depressing. They are not focused on Cure. Basically try one drug till that doesn't work and progress to the next and so on.

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Thanks for your comment and for sharing your story. Glad to hear you’re doing better. I checked out the Kaqun website. Very interesting. I’m curious. Could you tell us more about what the treatments involve, besides the water?

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Guess I am gonna open my big mouth, but some of these conversations are so sad. There is no quick fix, yet unfortunately there are so few qualified specialists to treat metastatic prostate cancer. By specialist I mean a Medical Oncologist who specializes in cancer of the genitourologic system - prostate, bladder, testicles, and kidney. They do exist; usually as professors at major medical school and associated with teaching hospitals with cancer centers. A Generalist, one who treats all cancers or a Urologist who is first a surgeon, is not who I looked for when faced with Stage 4 metastatic Prostate Cancer 14 years ago. Yet, I recognize that each of us have decisions to make.

Based on my two Radiation Oncologist suggestions, I turned to academia and research. I have not looked back and thus far, over 13 years, seem to have best this bastard. My guy says that I have.......

Over the past 14 years I have had close friends in the same boat as I. Each went a different path; one standard care with chemo late during the disease progression and the other, fearing chemo and hormonal injections, the alternative path. Sadly, each are gone by the age of 54 and 57. A third, given three months to live, lasted with quality of life for an additional three years until the bastard attacked his brain. I wish that he had seen my guy rather than being comfortable with his guy on the NW Coast...... but, we all have decisions to make.

Listen to what Alan has to say. He is well versed through his employer and personal experiences to rationally comment. There are others in this group that are fighting the good fight.

Keep kicking the bastard,

Gourd Danced

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Guess I am gonna open my big mouth, but some of these conversations are so sad and a metastatic Gleason 8 is nothing to jack around with. There is no quick fix - standard protocol is to delay disease until a miracle comes along, yet unfortunately there are so few qualified specialists to treat metastatic prostate cancer. Look toward research and academia as these Medical OncologistS are at the top of the their game and stand as cutting edge in treatment.

By specialist I mean a Medical Oncologist who specializes in cancer of the genitourologic system - prostate, bladder, testicles, and kidney. They do exist; usually as professors at major medical school and associated with teaching hospitals with cancer centers. A Generalist, one who treats all cancers or a Urologist who is first a surgeon, is not who I looked for when faced with Stage 4 metastatic Prostate Cancer 14 years ago. Yet, I recognize that each of us have decisions to make.

Based on my two Radiation Oncologist suggestions, I turned to academia and research. I have not looked back and thus far, over 13 years, seem to have best this bastard. My guy says that I have.......

Over the past 14 years I have had close friends in the same boat as I. Each went a different path; one standard care with chemo late during the disease progression and the other, fearing chemo and hormonal injections, the alternative path. Sadly, each are gone by the age of 54 and 57. A third, given three months to live, lasted with quality of life for an additional three years until the bastard attacked his brain. I wish that he had seen my guy rather than being comfortable with his guy on the NW Coast...... but, we all have decisions to make.

Listen to what Alan has to say. He is well versed through his employer and personal experiences to rationally comment. There are others in this group that are fighting the good fight.

Keep kicking the bastard,

Gourd Dancer

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Thanks, Gourd Dancer. I’m feeling pretty good about UCSF so far, waiting to meet the other specialists and getting recommendations, and will then pull the trigger.

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Hi Robert-E

I am so sorry to hear about your diagnosis. This is a great group here. They have a lot of good suggestions. I know I am still learning going through old posts. I wish you good luck. Be hopeful as there are many wonderful advances for prostate cancer.

It's never too soon to start moving to a healthy diet. Adding lots of fresh fruits and vegetables is a good place to start. Implementing a morning smoothie routine can be very helpful. It is easy to find frozen organic strawberries and use bananas as the sweetener. Then the sky is the limit as to what else you add. I suggest adding pomegranates if you can find them. I throw in some amla powder, moringa powder, vitamin C powder, probiotic powder, ground flax seed and beet juice powder. To make it not so thick about a 1/2 cup of Aloe Vera juice adds some interest.!

Remember to try to eat at least 1 serving of cruciferous vegetables a day.

The "How Not To Die Cookbook" was just released this week.. .it has tons of great suggestions and it is a beautiful book! I highly recommend it. Even if you are meat eater.. it is a lovely book.

My husband enjoys his ozone sauna. He also is rebounding and they both seem to have a positive affect on him.

I recommend meditation. Start with an in person class if possible.. I think it makes it easier. Adding meditation will help make this all a little more peaceful. It has helped my husband a lot.(And me too)

Prayers and Hugs!

Softwaremom00

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Thanks for your comment. I’ve been doing a lot of research into diet. My diet consisted of mostly eggs (3 every day for breakfast), chicken, and dairy for years. Interesting to now find that all of those are associated with increased risk for prostate cancer. My diet is now mostly vegan, with some fish. I have “How Not To Die” and will check out the cookbook. I already have a (spotty) meditation practice. The ozone sauna sounds interesting, will check it out.

Thanks again for your support! Best wishes for you and your husband!

Robert

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Integrative Doctoring, and Natural Healing Techniques, with supplemental support, can play a positive role.

Nalakrats

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Update: Met with the urologist from Stanford yesterday. He basically concurred with the radiation oncologist at UCSF: recommended getting a PSMA scan, then ADT+ (Lupron, Zytiga, prednisone), then radiation. He said some are combining ADT+ with Docetaxel, but it’s a tough sell because of side effects. He also said I should still consider surgery, maybe after 3-6 months on ADT. I’m in limbo now until Jan 5th, when I see Dr. Carroll at UCSF. In the meantime, doing research and changing diet, supplements, and lifestyle to best support myself for the road ahead.

I want to thank everyone for your comments. When first diagnosed, I was overwhelmed, feeling alone. It’s heartening to know there are others who’ve been down this road before and that there’s still hope for quality of life. I’m most grateful. Wishing everyone well on their healing journey.

Robert

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Hi Robert I was diagnosed with Prostate Cancer in 2006 and had Da Vinci radical prostectomy after 2 opinions put me in that direction. my tumour had burst the boundaries of the prostate gland but there was no evidence of metastisis to any other part of my body, which was supported by a full body scan after surgery. However, some years later, my psa did start rising again which led to me doing the standard course of 6 weeks of radiation. This brought my psa back under control but did cause further problems some two years after the radiation.

11 years after my surgery my PSA had again risen to 3 times what it was at the time of surgery and I have been on hormone therapy for a year now. At my last PSA test the reading came back as 0.00, UNDETECTABLE. But my treatment will go on until end 2019.

I have to mention that there is too much detail to share in this blog. But I am a survivor of 5 Cancer diagnoses altogether including 2 stage IV brain tumours in 12 month where I received a prognosis of only 5 months to live. That was 4 1/2 years ago and I have just received my 4th clear brain scan thanks to the wonderful work of my neuro surgeon. But I have written a book where I detail my whole journey through prostate cancer brain tumours and skin cancer.

You may find some useful insights as to what may be down the road for you by reading my book, "Fulfilling your dream; the battle to beat cancer" by Julian Axon. Available on Amazon.

Good Luck in your Journey Robert. you are not alone and need never feel alone.

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